Saturday, June 02, 2007


This morning I got a phone call from my mum. In a wonderful piece of timing with me being on holiday (so I don't have my file) AND it being a Saturday (so all helplines etc are closed), a letter has turned up from the Department of Work and Pensions.

I have been turned down for Disability Living Allowance.

Not reduced, but turned down flat.

Option 1: I have magically been cured. I'll go out and get a 40-hour-a-week job now, and start living my social life to the max too. I have to go shopping now, to get some new trainers for the marathons I'll be running this summer.

Option 2: The effects the illness has on my life are the same as ever, but the discrepancies between what I wrote on my forms about my condition and day-to-day life, and what the woman standing in for "my GP" wrote on her forms, has led them to think that one or the other of us is telling porkies. Obviously people with medical degrees don't ever make mistakes or get things wrong, therefore my statements are the ones which are wrong, and I need no help whatsoever with my care or mobility needs.

I have just under a month (28 days starting from the date their letter was written) to try and sort this mess out. Steve was going to be taking me home next week anyway, but now it will be nearer the beginning of the week than the end.

1. Draft some letters to the DWP. I may be able to find some templates online to help with this once I've got my head together.
2. Contact the ME/CFS clinic at the hospital who gave me the definite diagnosis of "yes, you have classic ME" and ask if they can reassess me.
3. Contact DIAL and see if they can help me.
3(b). If DIAL can't help, call Pip and arrange for him to help me lay siege to the Citizen's Advice Bureau (unfortunately the local CAB have broken email and don't answer the phone due to terminal understaffing, so you have to go in person and a wait of four hours or more should be prepared for).
4. Go through all my accounts and carefully plan my expenditure for the next year, eg exactly how much will be needed for rent, bills, etc.
5. Learn how to knit socks.

Other thoughts:
At least I've already done this once. When I lost my job, and the lovely income that went with it, I managed to trim things down until my outgoings were essential bills (rent, council tax, electric, water, landline phone line rental) plus £15 a week for everything else - from food to transport to phone calls/internet to toothpaste to Christmas presents. It wasn't much of a lifestyle, granted, and involved a lot of Lidl's pasta, but I definitely survived and I damn well will again.

Plus, I have the long-term incapacity benefit award (as supported by Dr W...) so at least there is a fixed income I can rely on, rather than trying to live out of savings.

Forecast: Sunny spells, but with intermittent tears and mood swings for a while. Warning! Warning! Flooding may occur.


The Goldfish said...

Can I suggest something else first? On Monday, give them a ring, ask them to look at your form again. Site the gist of your difficulties in a factual way.

One time, I got turned down flat for the lot and it was just one phone call to get it put right. It took a week or so to find out. Might not work, but it is worth a crack.

Also, remember that your twenty-eight days is to initiate an appeal, not to get this all sorted out. Take your time and whilst it feels terribly personal and demoralising, try to get some knitting done and not think about it too much during spells you can't do much about it.

It so very much easier to say than do given the circumstances; but try not to take it personally. The first time I applied I was turned down and there was literally no good reason. There was no information they didn't have, no inconsistency with what had been said by medics, the adjudication had simply contradicted the evidence. It went to tribunal and it was no problem to get what I was so obviously entitled to.

The second time I got turned down, well see above - whatever reason there was I never learned of it. It is almost as if they just want to test you every now and again to check you need it enough to fight for it.

I'm really sorry this has happened. But best of luck with sorting it out.

Mary said...

Cheers Jo.

Goldfish, thanks for pointing out to my addled little mind that it's 28 days to initiate proceedings rather than to completely sort out everything. I had gone a bit "eek! there's not an hour to be lost!" Perhaps I should state this as an example of my cognitive difficulties... I feel quite a lot better about things now. I can definitely write at least ONE coherent letter in a month.

I know it's not a personal thing. I know there's not a civil servant in an office somewhere going "haha! take up knitting, will she? We'll make her pay, we'll make them all pay..." I even know that Dr M isn't actually evil incarnate and trying to destroy me, she's just a young and probably quite inexperienced doctor trying to be all efficiency while attempting to fill the shoes of Dr W, who is both a very good and a very likeable GP and therefore leaves some hard-to-fill shoes.

I don't really want to make any phone calls to the DWP until I get home - for starters, Steve has no landline phone, and also, silly me, I neglected to bring my filing cabinet on holiday with me so I don't have all the dates and numbers here. What I will do, is start planning out what sort of things I might want to say in such a phone call (or equivalent letter), and any pointers you or anyone else feels like commenting or privately emailing me are very welcome.

Queen_Mum said...

In situations like this it is very painful and personal to present one's case. Finding an advocate or social worker to make your calls and present your situation might be helpful.

Here, lawyers devote their complete practice to advocacy for denied disability claims. And they usually win. Often it is due to incomplete written medical documentation.

Mary said...

hi queen_mum. The advocacy thing is why I need to contact DIAL or the Citizen's Advice Bureau. The "painful and personal" bit doesn't worry me so much. It's more that I don't have much by way of brainpower, stamina or coherence to stand my corner properly. That's why Dr M was able to walk all over me - because I was having trouble articulating that she'd got entirely the wrong end of the stick.

DIAL would be my first choice. It's a group of mostly volunteers (I think there are 2 paid full-timers at the local office) and they deal with all sorts of disability-related stuff. A number of them have done welfare rights training and the suchlike, and can help with filling the forms and preparing appeals and so on, and if appropriate, someone can come with you to the appeal to represent your interests. When I was at work we had regular dealings with them. They're very good.

However, because they're very good, they might not have an available "slot" to see me within the next three weeks. In which case my next fall-back is the CAB.

menonita said...

it is really had been a diary. :)
strainge. i like here. and like your wrtings if u want to see mine it is

Anonymous said...

It might just be a clerical error, my mum's pension was stopped because someone had put down on file she was dead when inputting her details. She rang them and the woman on the other end of the phone told her in a matter of fact voice that my mum was wrong and that she was dead!

Mary said...

good grief. I think I prefer "cured" to "deceased".

Anonymous said...

Don't necessarily think that it was any of those things they actually have targets to turn down a certain number of cases.

Two other sources of help might be. Does your council have a welfare rights unit? They can be very good.

Also there is a site called

Part of their site has gone members only for a modest fee but they are excellent. They are the ones who have been highlihting that the Agency is looking for test cases to use so as to cut back on what can be claimed for. But more importantly they do Guides about how the mechanics of the claim packs are actually assesed.

Serena said...

Oh, that's a real pain! The first thing to do is to write to them, asking for the full reasons for their decision, including a copy of the doctor's report. You can ask for the appeal forms at the same time.

If you can scan these documents, they make a very good basis for your appeal ("you said [whatever rubbish], actually the situation is [corrected version]"). I found it far easier to do this in a word document and attach this to the appeal form.

If the doctor's report is as bad as you suspect, it could be worth going back to see her and asking her to correct it, especially if there's stuff which is likely to be contradicted by your notes. It's worth making it as easy as you can for her to do the right thing as this could really help.

If you want more time to get your thoughts together, you can extend the time by asking them to review their decision. If you do this and they don't change their mind, the 28 day clock for putting in an appeal starts again from the day they confirm the decision. If you decide to go straight to appeal, the first thing they will do is review the decision anyway so, you may want to just go for the appeal.

Don't forget, you can carry on submitting additional stuff right up to the time of the tribunal, so there's no need to wait till you've got any supporting documents before you put your appeal in.

Good luck!

Anonymous said...

Have you tried lying to them? From my experience with any benefits agency you will always be penalised if you tell the truth. Lie, lie like buggery you'll never get caught!

In all seriousness though I hope it gets sorted out and doesn't mash your head in too much

Mary said...

So, Serena, let me check I have this straight:
1. ask them to review their decision.
2. Ask for the full reasons for their decision including copies of evidence.
3. Go to appeal.

Roxy, how's this:
"In addition to the difficulties described above, I was recently mugged by rabid squirrels who mistook me for an ambulatory acorn. They have left me with no arms, legs, or head. I am writing this solely by the power of my belly-button and a novelty nipple tassel."

Katie said...

Boo! That's rubbish. Good luck, Mary.

Not that it's any consolation, but I once got turned down for DLA because the Doctor doing the assessment decided I would be cured in six months. Of cerebral palsy!

And instead of going, "Oh, it's a stupid GP who doesn't know what CP is", the DWP went, "Oh, the GP must be right, let's stop her DLA."

Which did get sorted reasonably quickly, but was very annoying and stupid and pointless. So good luck.

Also, I particularly enjoy that you're disabled enough for IB, but apparently not for DLA.


Serena said...

So, Serena, let me check I have this straight:
1. ask them to review their decision.
2. Ask for the full reasons for their decision including copies of evidence.
3. Go to appeal.

I would do no 2, asking them for the full reasons, first. Without knowing the full reasons for their decision, it's very hard to rebut it.

I'd only bother with no 1, asking for a review, under two circumstances. First, if there are blatant inaccuracies in their decisions (such as lying about what you actually said), as these are very easy to rebut. Secondly, if it's likely to be difficult getting your appeal documentation in within the 28 days. In the latter case, you don't want to be too quick about requesting the review as you want as much time as you can get!

Although you do hear occasional cases of their changing their decision immediately, it doesn't happen often. This is why I would consider it more a way of buying time. If you're putting together a full case, it might as well be submitted along with the forms requesting an appeal. Otherwise, the chances are, you'll just have to go through the process twice.

Mary said...

Hi Katie - yes, I'm disabled enough for IB, awarded less than 6 months ago for several years solid, but that was with my actual GP, Dr W, writing the report. The only difference here is the locum/GP. I still have the same illness and it still affects me in the same ways.

In fairness (for those lucky gits in the audience who've never had to deal with this crap) IB and DLA are on different criteria - IB is about fitness to work and is assessed on stuff like being able to pick things up and sit at a desk and stand for long periods of time, whereas DLA is more about dealing with your own personal care, and mobility.

But even so...

Serena, I've just been on the phone to DIAL (I cannot handle this myself, not even with the support of teh internets) and I'm about to post the route we're taking and what happens next.

Anonymous said...

The novelty nipple tassel gives me an image I could do without but apart from that I think it's a winning story


Anonymous said...

How awful, particularly as you predicted the locum GP might mess up. Can't you write to your real GP (she must be a sympathetic person, from what you already said)? You could get her to check the medical report submitted and submit something else.

Sometimes, it's just a bureaucratic way of testing whether you are determined enough. Shouldn't be, but so many things in life are like that. I definitely recommend getting some advocacy to take some of the personal stress out of it. And lawyers are not a bad idea, since the bureaucracy tends to back off if they see you have a lawyer, looking for mistakes.

Mary said...

The real GP is on maternity leave - in other words, she is not to be contacted about anything to do with work. Which this is.

I asked about and I hear she's not due back until late autumn.